I knew I was different long before I was diagnosed with Aspergers

Thursday, February 06, 2014

By Fiona Pettit O’Leary

When Fiona Pettit O’Leary was diagnosed with Asperger’s at 42, it suddenly made sense of her troubled childhood and teenage years

AS a little girl, I was engaged with the world in a deep and magical way. I frequently got lost, I was an eternal daydreamer. I needed time to process my environment, being so easily and gleefully distracted.

I had a make-shift hotel in my bedroom for caterpillars and ladybirds and moths, which I ‘rescued’ from what I named ‘Moth Lane’, near my house. I empathised with the more colourful and eccentric characters in my neighbourhood. The homeless seemed to me like the wounded moth or lame spider in need of help, and I would have no qualms about bringing them home with me.

I am still like this today. I have never been able to walk away from someone in trouble, even strangers who look unsafe. I have risked engaging where others have backed away.

I have learned to reign in this trait, or at least to be more careful, but I am, in my heart and actions, passionate about human rights. I have learned this is a common trait among women who have Asperger’s, a neurological diagnosis I received last November, at the age of 42.

I have a long history of depression and anxiety-related issues, which is not so surprising, when you consider my childhood was marred by troubled times. My Asperger’s went undiagnosed, probably because, like so many girls on the autistic spectrum, I learned how to blend in and mimic the social norms, and because my sometimes strange behaviour and anxiety could be explained away by a ‘bad childhood’. Nobody, family and professional alike, seemed to notice that all the standard treatments and therapies just did not work for me.

As a teenager, I developed coping strategies. I found it exhausting just being Fiona. There was an ever-present feeling of disconnection, which I did not understand, so I denied its presence and covered it up in any way I could.

My inner turmoil, I believe, caused my anorexia at the age of 16. I have a tendency to become obsessive. I can bring incredible focus and determination to whatever I do, which is a useful skill if it is channelled in a positive direction.

Unfortunately for me (and for many other Asperger girls), it manifested in destructive behaviours. I had many ‘meltdowns’, episodes of panic and confusion when the strain became unbearable. In 1989, at the age of 18, I attempted to take my own life.

Thankfully, I survived, but none of us could figure out what was at the heart of my struggles.

I met my future husband, Tim, at the age of 17, and we fell in love instantly. He ‘got me’ like no one else ever could and, by his own admission, my being different is what attracted him to me in the first place.

We now have five children and are still very much in love. Our eldest son, Dillon, is autistic, having been diagnosed at the age of 3.

Yet, when our son, Vito, was diagnosed with Asperger’s, at the age of 8, it came as a shock. You couldn’t find two boys so different — yet both are on the autistic spectrum.

I had lived with autism for years, and yet I was spurred on to learn more when University College Cork unveiled its landmark ‘Certificate in Autism Spectrum Studies’ in 2013. It is the first of its kind, promoting great strides in the understanding of autism.

I secured a place in the Bantry venue, and there I met my inspirational lecturers, Donna Treya and Kirsten Hurley. Kirsten, and Dr Stuart Neilson (another lecturer in UCC), have a uniqueness to their credentials as lecturers, as they both have Asperger’s.

At one of Kirsten’s lectures, when she described her own journey and diagnosis of Asperger’s, the penny finally dropped for me.

I related to almost everything she described, coupled with what I had learned about a genetic link within the autistic spectrum.

I had to know, for sure, so I searched and found one of the few neuropsychologists in Ireland who had the qualifications and experience to accurately assess a female for autism/Asperger’s.

I left the clinic with no doubt. It is a fact: I have Asperger’s.

It was a life-altering realisation, a liberation from the confusion around why I am the way I am. I searched for fellow ‘Aspergirls’, as the title of Rudy Simone’s book on women with Asperger’s affectionately names us. I joined online support groups, and, finding a lack of female-perspective groups within Ireland, I have created my very own Facebook group, ‘Female Aspergers/Autism Support Ireland’ (FASI).

Through FASI, I have made contact with many wonderful women who have similar stories to my own.

There is a lack of awareness in diagnosis about the different way that females present on the autistic spectrum.

Girls are so adept at masking their differences, and mimicking social norms, from a very young age, that the majority slip under the radar.

This lack of accurate diagnosis often means that girls develop serious issues, such as anorexia, depression and anxiety disorders, as they fail to cope with the stress of unknowingly being ‘on the spectrum’.

Portrayals of Asperger’s in the media and in film are becoming more common: in the TV series, The Bridge, the main female character has Asperger’s. In the American version, Diane Kruger plays Sonya Cross, who has Asperger’s. Kruger based her character’s traits on an Asperger male and from consultation with the controversial organisation ‘Autism Speaks’, which openly considers autism curable (and, ideally, eradicable).

This set alarm bells ringing in my mind. We need less ‘Rainman’ and more ‘Rainwoman’.

A recent article in the Daily Telegraph, about the new wave of TV detectives, falls somewhat at the first hurdle in depicting these characters as having ‘high-functioning mental disorders’, although the article does redeem itself by saying that if you have met one person on the spectrum, you have only done that, as no two will be the same. The myth that those on the autistic spectrum lack empathy is now largely discredited.

In fact, it may be we feel too much empathy, which is why we may ‘shut down’ (as a result of a sensory overload).

Past and present depictions on the silver screen do not seem to be able to impart this subtle, yet vital difference. The fact is that autism/Asperger’s is a neurological ‘condition’. I may think a little differently than your average person, but that doesn’t make me mentally ill.